Pandemrix narcolepsy

A new narcolepsy epidemic

In 2010 there was a startling increase in narcolepsy across the UK and northern Europe. With new cases developing on a weekly basis, some doctors described it as an epidemic.

Pandemrix to prevent swine flu

During the Swine Flu epidemic of 2009/10 the vaccine Pandemrix was given to six million people in the UK, to high-risk groups, including children, with asthma, diabetes and heart disease. The vaccine had been approved by the European Medicines Agency for use across the EU, despite minimal clinical trials. The manufacturer, GlaxoSmithKline, was given an indemnity by the UK government. Some 850,000 vaccinations were given to children aged between 6 months and 16 years. After the pandemic, in 2010/11, a further 170,000 adults and children received the jab when seasonal flu vaccine supplies diminished.

Pandemrix caused narcolepsy

The UK Health Protection Agency (now Public Health England) undertook a major study of 4- to 18-year-olds and found that around one in every 55,000 jabs led to narcolepsy.

Campaign for compensation

Narcolepsy campaigns for compensation for those who have developed narcolepsy as a result of Pandemrix vaccination. There are two potential routes to vaccine injury compensation. The first is the Vaccine Damage Payment scheme, a statutory scheme that provides a one-off tax-free payment of £120,000 to individuals who are severely disabled as the result of a vaccination. It is also possible to make a claim for compensation against the manufacturer of the vaccine in the civil courts.

Success under Vaccine Damage Payment Scheme

On 9 February 2017, the Court of Appeal ruled against the Department for Work & Pensions (DWP) in an appeal it had brought against paying £120,000 vaccine injury compensation to a seven-year old boy who developed narcolepsy after having the Pandemrix swine flu vaccination in 2009. The anonymous child, known as “John” for the proceedings, is now 14-years-old and was vaccinated with Pandemrix against swine flu (H1N1) in December 2009. Within a few months, he developed symptoms of narcolepsy and was later formally diagnosed with the condition.

In January 2012, John applied to the DWP for compensation under the statutory scheme. The DWP accepted that he had been properly diagnosed with narcolepsy and that on the balance of probability, his narcolepsy had been caused by the vaccination. However, the DWP said this was not a “severe” disability and compensation was denied.

John subsequently appealed the decision to the First Tier Tribunal, which in September 2014 ordered the DWP to pay out, as it found John’s narcolepsy was indeed “severe”. The DWP refused to pay out and appealed to the Upper Tribunal, arguing that only problems John had at that time could be taken into account, and not the future impact of his condition.

In June 2015, the Upper Tribunal rejected the DWP’s submissions and dismissed its appeal, prompting the DWP to make the £120,000 compensation to John. However, the DWP then went to the Court of Appeal, maintaining that the proper approach to assessment of disability is to ignore any aspects of the disability that may be experienced in the future.

That approach has now been rejected by the Court of Appeal, bringing welcome relief to those who developed narcolepsy as a result of taking the swine flu vaccination and who have been awaiting payment from the DWP scheme. The judgment means that the DWP now has to take into account the impact that disability has on a person’s entire life, and not just the impact it has on the individual at the time their claim is made under the scheme.

The judgment is the first time that the UK Court of Appeal has considered a case of vaccine injury compensation under the UK statutory compensation scheme. The scheme was established in 1979 for the rare occasions when severe disablement is caused by vaccination. The decision is now binding on all future assessments of disability brought under the Act.

How we are helping

Narcolepsy UK is assisting victims find legal representation and is providing information and support. We believe the total number of people affected by Pandemrix narcolepsy in the UK could reach 120. More than 100 attended our first “Pandemrix” Conference in Birmingham in 2014, including families with affected children and several others, mainly front-line health workers.

Why this matters

We believe that the causal link between the Pandemrix vaccine and a rise in narcolepsy cases has been established, and that our society has an obligation to look after individuals who develop narcolepsy as a result.

If you believe that you, or someone you know, may have developed narcolepsy following a Pandemrix vaccination, please contact us.